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5 Ways To Take an Active Role at Your PAH Doctor Visits

Updated on December 27, 2022
Medically reviewed by
Steven C. Pugliese, M.D.
Article written by
Caroline Wallace, Ph.D.
Article written by
Suzanne Mooney

Pulmonary arterial hypertension (PAH) is a specific type of pulmonary vascular disease that occurs when high blood pressure affects the right side of the heart and the arteries in the lungs. Over time, this rare condition can lead to heart damage.

Properly managing PAH is essential because it can cause other heart disease complications, including right-sided heart enlargement and heart failure. Research shows that individuals who work with their doctors to plan their treatments are more engaged in their health, which helps improve outcomes in PAH. Here are five ways to take an active role during your doctor visits.

1. Prepare for Appointments

Spend some time preparing for your medical appointments to make the most of your time with your doctor. If you are early in your PAH journey, assess your goals related to quality of life (well-being) so that you can clearly communicate them when you and your doctor are discussing and deciding on treatment options. Writing your thoughts in a journal before each consultation could be a helpful practice.

Another great way to prepare for appointments is to list your questions ahead of time. It can be challenging to remember everything you want to ask when you’re also trying to digest the information your doctor is sharing. Spending some quiet time alone to think through and write down your questions can help you take an active role during your doctor visits and ensure you get your answers.

“Today, I go for blood work and then to see the doctor,” said one myPHteam member. “I have so many questions for him. I wrote them down in my journal so I wouldn’t forget.”

2. Take a Family Member or Trusted Friend With You

Take a family member or trusted friend to health care appointments so that they can help you jot down notes and remember important points from the discussion. They may also think of questions that you had not considered.

Discuss how you would like your care partner to participate and how they can help you take an active role during your visit. Will you rely on them to be the notetaker? Can they ask the doctor questions directly? Would you like them to leave the room at any point for privacy? Ensuring ahead of time that you are on the same page can make the visit a positive experience for both of you.

The people closest to you can also provide emotional support during and after appointments and help you evaluate your treatment options. Shared decision-making with your doctor and those who know you best can help you feel supported.

“Weigh your pros and cons, and take your time making your decisions,” recommended a myPHteam member. “If that fails, do you have a close family member that you can trust? If so, maybe that person could help you.”

3. Talk Openly With Your Doctor

Although some factors can be measured, like blood pressure and oxygen levels, others require you to take an active role by sharing what and how you are feeling. No matter how minor you think a symptom, health change, or other concern may be, tell your doctor.

Because PAH is a progressive condition that gets worse over time, clear communication with your doctor about your symptoms and treatment plan can help improve your outcomes. This is especially true if you are African American and living with PAH.

Unfortunately, racial disparities (preventable differences due to race) exist in health care settings. An American Journal of Public Health study that involved 61 doctors found that they engaged in 33 percent less patient-centered communication with African American versus white people that they treated. Another study, published in Annals of Internal Medicine, found that when African American people see African American doctors, they feel more involved in the decision-making, are more satisfied with their care, and have a higher degree of trust.

Communicate openly with your doctor, and if you ever feel like they aren’t listening to you because of your race, age, gender, or other factors, be persistent or find a doctor who will listen.

​​“Staying vigilant and persistent with communications to your doctor is imperative. You know you best,” said one myPHteam member. “Communication is key,” said another.

4. Ask Lots of Questions

If you are living with PAH, you may be familiar with multiple procedures and treatment options — phosphodiesterase type 5 inhibitors, prostacyclins, endothelin receptor antagonists, calcium channel blockers, combination therapies, and more. Each option has its own set of pros and cons. By taking an active role in your doctor visits and asking questions, you can get the information you need to choose the therapy that best matches your health, lifestyle, and treatment goals.

Ask about the benefits and risks you can expect from PAH treatment. Ask about symptoms, side effects, lifestyle changes that may improve your quality of life, and anything else you want to know about managing PAH. Repeat your doctor’s instructions or information back to them to make sure you understand their advice and recommendations.

If you have more questions after your appointment, use your patient portal or provider’s online messaging system to send your doctor a follow-up message. There’s no such thing as too many questions when it comes to your health.

Take the advice of one myPHteam member: “Ask lots of questions!”

5. Advocate for Yourself

A pulmonary arterial hypertension diagnosis involves a process of elimination to rule out other potential diseases and causes. Furthermore, PAH treatments may differ from person to person, depending on the case’s type and severity, the person’s age, and other health factors. If you are living with idiopathic PAH, in which the cause of your PAH is unknown, the inability to fully understand your condition may also be stressful.

Throughout your journey with PAH, you can take an active role by advocating for yourself. If your doctor recommends something, ask why. If you are having difficulty managing your symptoms or are concerned about disease progression, tell your cardiologist that you would like to explore other options. If you’re interested in clinical trials, ask for their help in finding some that could be right for you.

Advocating for yourself may also mean asking for a referral for a new cardiology specialist if your current one isn’t the right fit or doesn’t listen to your concerns. Experts recommend getting a second opinion to ensure that you get the care you need. Receiving an accurate diagnosis and an effective treatment plan is more important than worrying about potentially offending your health care provider by shopping around to find the care you need.

“My husband was diagnosed with pulmonary arterial hypertension today,” shared one myPHteam member. “He has right-sided heart failure and is on 8 liters of oxygen. We finally found a doctor to diagnose him after numerous doctors.”

If you need to find a clinician who treats PAH, the Pulmonary Hypertension Association provides a free directory that may help you with your search.

Taking an active role during your PAH doctor visits can help you better navigate your care and lead a fulfilling life. You may also find it helpful to connect with others who have PAH and can understand what you are going through.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 48,000 members come together to ask questions, give advice, and share their stories with others who understand life with PH.

How do you take an active role at doctor visits for pulmonary arterial hypertension? What practices have you found useful and beneficial for your care? Share your thoughts in a comment below or by posting on your Activities page.

    All updates must be accompanied by text or a picture.
    Steven C. Pugliese, M.D. is affiliated with the Hospital of the University of Pennsylvania in Philadelphia, serving as the director of the pulmonary embolism response team, co-director of the comprehensive pulmonary embolism program, and an assistant professor of clinical medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
    Caroline Wallace, Ph.D. has a doctorate in biomedical science from the Medical University of South Carolina. Learn more about her here.
    Suzanne Mooney writes about people, pets, health and wellness, and travel. Learn more about her here.

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